This past Sunday, I was baptised at the Elizabethtown Church of the Brethren and subsequently joined the Church. During Sunday's service, I delivered a faith statement to the congregation. These are my words.
I was raised in the earlier traditions of the Christian church. (Thanks to author Marcus Borg for providing this terminology!) During this time, I learned that the Bible represents the divine words of God, that my religion was the one true religion, and often feeling frightened that my salvation was in jeopardy when I made a mistake.
As I matured and experienced life, I found little in this view of Christianity that attracted me. I was absent from the Church - and from faith - for more than 10 years when I was introduced to the Elizabethtown Church of the Brethren. Hungry for a source of meaning and value, I began to seek a new framework to shape how I now view life.
For me, Elizabethtown Church of the Brethren is what Christianity and the Christian way of life are about. I want religion to be about more than doing what is needed to be saved. I am proud to be in the beginning stages of this journey and to make a commitment to follow Jesus Christ today.
Monday, December 20, 2010
Monday, December 13, 2010
Our Christmas Gossip Letter
I love receiving and reading family update letters during this holiday season. Maybe it's the PR side of me. My mom calls these holiday card inserts "gossip letters." Whatever your perspective, I wanted to share our family letter for 2010.
Last Christmas, we did not include a letter with our holiday cards. We knew you would understand considering that, three months prior, we welcomed Vivienne Michele into our lives. What a joyous occasion and one that continues to exceed every expectation we had for motherhood. This Christmas, we have found a rhythm with Viv and can say that we finally accomplish important tasks while she is awake and asleep. This is progress!
In January of 2010, Amy left her employ at Elizabethtown College to care for Vivienne. At the same time, she began providing daycare for Dougie who is a child of Shannon’s colleague and nearly the same age as Viv. Amy is thriving in her new role. She loves doing activities with the kids, taking them for walks in our neighborhood, and teaching the kids to use sign language. In her spare time, she tries to keep up with her woodworking craft and has also taken up a new hobby, knitting.
Last Christmas, we did not include a letter with our holiday cards. We knew you would understand considering that, three months prior, we welcomed Vivienne Michele into our lives. What a joyous occasion and one that continues to exceed every expectation we had for motherhood. This Christmas, we have found a rhythm with Viv and can say that we finally accomplish important tasks while she is awake and asleep. This is progress!
In January of 2010, Amy left her employ at Elizabethtown College to care for Vivienne. At the same time, she began providing daycare for Dougie who is a child of Shannon’s colleague and nearly the same age as Viv. Amy is thriving in her new role. She loves doing activities with the kids, taking them for walks in our neighborhood, and teaching the kids to use sign language. In her spare time, she tries to keep up with her woodworking craft and has also taken up a new hobby, knitting.
Shannon is now in her third year of work at Auntie Anne’s Corporate Headquarters. As Senior Public Relations Specialist, Shannon is responsible for consumer engagement, charitable giving, and social networking. It is a perfect fit! She traveled about five times for work this year, including Atlanta, Washington, D.C., Atlantic City, and New York City. In her spare time, she documents the many family happenings through photographs and scrapbooking. She also started blogging at www.reflectingthesunshine.blogpost.com.
As Viv took on a more regular eating, napping, and sleeping schedule, we became more adventurous in our activities, outings, and trips. In 2010, we spent a fair amount of time in the Staplers’ swimming pool, the skybox at the Barnstormers games, Perry County cabin, Bee Tree cabin in Lycoming County, and visiting family in Southern Maryland. Our main vacation in June was to the sunny and sandy Outer Banks with some of our family members. Another highlight at the end of 2010 has certainly been taking Vivienne to the Philadelphia Museum of Art as well as her first theater performance, “Fairies & Fireflies.”
Viv has an amazing temperament, a beautiful smile, and an infectious laugh, all things that have developed over the last 12 months. It’s amazing to realize that our daughter has grown from sitting with support, to rolling over, eating solids, pushing up, crawling, eating “real” food, walking, and now running. On September 23, we celebrated Vivienne’s first birthday, and it was an amazingly memorable occasion. Many people continue to comment on Viv’s hair, and she has a lot of it. In fact, she’s had five haircuts this year. Her current favorites include shoes, tubby time, reading, and eating.
Additionally, we continue to remember the lives of Anya & Tegan, our beloved twins who would have celebrated their second birthdays in April. We honored their lives by planning and participating in Share of Lancaster’s Benefit Dinner & Auction and kayaking at Speedwell Forge.
We are delighting in our new home where we have now lived for 1 ½ years. We are close to most everything, including Lancaster city and all major, local highways making every excursion a relatively easy one. Around the house, we started (and mostly completed) a dining room remodel project as well as the removal of a huge fish pond in our backyard and a variety of plant relocations and flower bed removals to make the yard more manageable for our busy lifestyle.
We are blessed to celebrate the seasons of life with our friends and family. We enjoyed birthdays, weddings, and play dates with cousins. And we welcomed new life into our family, Reily, our niece born in April. As we gather together this season, may we all feel the blessings of love and life upon us, celebrating the good moments of 2010 and remembering those whose journey on earth has ended.
Tuesday, December 7, 2010
Orange is the New Pink
Dr. Laina Turner Molaski is on a mission to raise awareness for Multiple Sclerosis through her initiative, Orange is the New Pink. Using collaborative efforts, Laina is seeking to create the kind of awareness for MS that already exists for breast cancer pink. One of her efforts is a book entitled Orange is the New Pink: Stories to create awareness for Multiple Sclerosis. This is my story.
In the summer of 2001, my life partner, my friend, and I were vacationing together. We traveled a lot that year with eagerness to explore the states surrounding our hometown in Pennsylvania. Whatever destinations were within driving distance, we visited them and preserved our visits with photographs. Our last stop on this particular journey was New Orleans, and it was hot, very hot and humid.
After returning home from our adventure, I began noticing a "funny feeling" on the bottoms of my feet. Actually, the feeling was that I could not feel my feet. I knew they were there, I could see them, but I couldn't distinguish carpet from linoleum, hot from cold. At first, I shrugged off the “non-feeling.” I had just returned from vacation, and we had walked a lot. We toured various cities and towns on foot. My feet were fatigued; yes, I was just worn out.
But the abnormal sensation persisted, and that's when I grew worried. In fact, I recall sitting on my bed one sunny afternoon literally scratching the bottoms of my feet trying to bring back any sense of feeling, even pain. In my head, I pleaded with God. Please, God, make my feet normal again. I'll bargain with you. What do you want in return?
More time elapsed and I ultimately scheduled an appointment with my family doctor. This appointment initiated what would become my lengthy MS diagnosis process. I started with a neurosurgical spine specialist to explore the possibility of a pinched nerve. This doctor recommended MRI scans beginning with my lumbar spine and eventually moving up to evaluate my cervical spine. It was a dreadful experience for a claustrophobic. While the radiologist noted bulging discs, the location of these discs did not coincide with the sensations in my feet.
I then had a nerve conduction velocity test to determine the speed of electrical signals through my nerves. No amount of doctor-patient discussion can prepare one for this particular test. Electrodes are placed over nerves on various locations of the skin. Each patch administers an electrical impulse to stimulate the nerve, starting with a small shock and then growing in severity. Then the doctor positioned needles into various muscles, and I was asked to contract the muscle. Pain. Discomfort. Agony. These expressions are simply the best way to describe this torturous test. The pain is followed by extreme body ache and fatigue and, all of this to learn that my nerve conduction was within normal range. While eliminating the diagnosis of some other diseases, the Electromyography did not provide significant information for my current situation.
Having exhausted their part in diseases diagnosis, the spine specialist passed my medical chart on to a neurologist. At my very first appointment, the neurologist explained that the likely cause of my paresthesia was Multiple Sclerosis and, unfortunately, MS is a diagnosis of exclusion that can take years to formall conclude. Many signs of MS can be attributed to a number of other medical conditions and there is neither one sign nor one test that proves this baffling disease. The neurologist waffled over a Lumbar Puncture and ultimately recommended this test in hopes of gleaning useful information for my case. The result? My Cerebrospinal Fluid presented with OligoClonal Bands symptomatic of MS. It was another piece in my MS puzzle but still not enough to conclusively make the diagnosis.
Years had elapsed, and the majority of feeling in my feet had returned although I continued to experience numbness and tingling from mid-thigh down to my feet. Our next course of action, as determined by the neurologist, was a wait-and-see approach. While Multiple Sclerosis was strongly suspected, he wanted to document at least two distinct relapses. So, I waited....and waited....and waited...and worried....and waited. Finally, in May 2007, my body failed me again, and I lost feeling altogether in my legs. While I could still walk, I couldn't feel simple touches to my skin or varying temperature. Another round of MRIs concluded that I had a new lesion on my brain, and I had Multiple Sclerosis.
How do I explain that moment of diagnosis? Elation? Relief? Sadness? Worry? It was a long journey, nearly six years of tests and uncertainty, and I had, at last, an answer. Better yet, I could begin taking MS medications that are documented to slow the symptoms of Multiple Sclerosis when taken early in the diagnosis process. Multiple Sclerosis wasn't a death sentence but it was a disease, a medical condition that could and would affect every part of my life, a life that stretched out before me at the age of 28.
Presently, at 31 years of age, I have developed tactics to control the uncertainty of this diagnosis, both in mind and in body. I created the Sunshine Squad. My team of family and friends annually develops fundraisers and we walk in solidarity to raise money for the National MS Society. Furthermore, my relationship with the Central PA Chapter of the MS Society afforded me the opportunity to travel to Washington, D.C. and lobby Capitol Hill for funds to benefit MS research. These actions are empowering over Multiple Sclerosis and push me to be visible and approachable about my disease, thus living well with a demanding disease.
Thankfully, my Relapsing-Remitting MS has not prevented me from maintaining full-time employment in the field of Public Relations. I have found ways to navigate my symptoms, including list making for memory loss and an online dictionary or web search portal for those times when I forget a specific word I am seeking. This factor is the most painful part of my MS story, I believe. I experience slowed thinking and often struggle in finding words, both of which make my role as a communications professional just a bit more challenging.
Together, my partner of 10 years and I have a young daughter. Amy has been a part of my disease since the very beginning, and I genuinely offered her the opportunity to end our relationship when the final diagnosis was administered. She didn't, of course, and continues to do her best to understand Multiple Sclerosis as well as the many facets that impact our life and experiences together, including fatigue and heat sensitivity. I worry about the strains I may eventually place on her as a caregiver.
Regularly I also worry about the impact of Multiple Sclerosis on my relationship with my child. Dizziness has disconnected me from her life on two occasions already and although Vivienne doesn't understand the complexity of my disease, I feel an emotional twinge when I can’t fully participate in her daily activities. I have made a point to keep a journal about Vivienne's routines and idiosyncrasies so I can recall them in six months or 16 years. But what will happen if one day I cannot walk? What if I can't help my daughter with her homework? What if I miss Vivienne’s school or extracurricular events because of my fatigue or another symptom yet to strike? These are the considerations that keep me awake at night and keep me lobbying for MS awareness, research, and eventually….hopefully, a cure.
In the summer of 2001, my life partner, my friend, and I were vacationing together. We traveled a lot that year with eagerness to explore the states surrounding our hometown in Pennsylvania. Whatever destinations were within driving distance, we visited them and preserved our visits with photographs. Our last stop on this particular journey was New Orleans, and it was hot, very hot and humid.
After returning home from our adventure, I began noticing a "funny feeling" on the bottoms of my feet. Actually, the feeling was that I could not feel my feet. I knew they were there, I could see them, but I couldn't distinguish carpet from linoleum, hot from cold. At first, I shrugged off the “non-feeling.” I had just returned from vacation, and we had walked a lot. We toured various cities and towns on foot. My feet were fatigued; yes, I was just worn out.
But the abnormal sensation persisted, and that's when I grew worried. In fact, I recall sitting on my bed one sunny afternoon literally scratching the bottoms of my feet trying to bring back any sense of feeling, even pain. In my head, I pleaded with God. Please, God, make my feet normal again. I'll bargain with you. What do you want in return?
More time elapsed and I ultimately scheduled an appointment with my family doctor. This appointment initiated what would become my lengthy MS diagnosis process. I started with a neurosurgical spine specialist to explore the possibility of a pinched nerve. This doctor recommended MRI scans beginning with my lumbar spine and eventually moving up to evaluate my cervical spine. It was a dreadful experience for a claustrophobic. While the radiologist noted bulging discs, the location of these discs did not coincide with the sensations in my feet.
I then had a nerve conduction velocity test to determine the speed of electrical signals through my nerves. No amount of doctor-patient discussion can prepare one for this particular test. Electrodes are placed over nerves on various locations of the skin. Each patch administers an electrical impulse to stimulate the nerve, starting with a small shock and then growing in severity. Then the doctor positioned needles into various muscles, and I was asked to contract the muscle. Pain. Discomfort. Agony. These expressions are simply the best way to describe this torturous test. The pain is followed by extreme body ache and fatigue and, all of this to learn that my nerve conduction was within normal range. While eliminating the diagnosis of some other diseases, the Electromyography did not provide significant information for my current situation.
Having exhausted their part in diseases diagnosis, the spine specialist passed my medical chart on to a neurologist. At my very first appointment, the neurologist explained that the likely cause of my paresthesia was Multiple Sclerosis and, unfortunately, MS is a diagnosis of exclusion that can take years to formall conclude. Many signs of MS can be attributed to a number of other medical conditions and there is neither one sign nor one test that proves this baffling disease. The neurologist waffled over a Lumbar Puncture and ultimately recommended this test in hopes of gleaning useful information for my case. The result? My Cerebrospinal Fluid presented with OligoClonal Bands symptomatic of MS. It was another piece in my MS puzzle but still not enough to conclusively make the diagnosis.
Years had elapsed, and the majority of feeling in my feet had returned although I continued to experience numbness and tingling from mid-thigh down to my feet. Our next course of action, as determined by the neurologist, was a wait-and-see approach. While Multiple Sclerosis was strongly suspected, he wanted to document at least two distinct relapses. So, I waited....and waited....and waited...and worried....and waited. Finally, in May 2007, my body failed me again, and I lost feeling altogether in my legs. While I could still walk, I couldn't feel simple touches to my skin or varying temperature. Another round of MRIs concluded that I had a new lesion on my brain, and I had Multiple Sclerosis.
How do I explain that moment of diagnosis? Elation? Relief? Sadness? Worry? It was a long journey, nearly six years of tests and uncertainty, and I had, at last, an answer. Better yet, I could begin taking MS medications that are documented to slow the symptoms of Multiple Sclerosis when taken early in the diagnosis process. Multiple Sclerosis wasn't a death sentence but it was a disease, a medical condition that could and would affect every part of my life, a life that stretched out before me at the age of 28.
Presently, at 31 years of age, I have developed tactics to control the uncertainty of this diagnosis, both in mind and in body. I created the Sunshine Squad. My team of family and friends annually develops fundraisers and we walk in solidarity to raise money for the National MS Society. Furthermore, my relationship with the Central PA Chapter of the MS Society afforded me the opportunity to travel to Washington, D.C. and lobby Capitol Hill for funds to benefit MS research. These actions are empowering over Multiple Sclerosis and push me to be visible and approachable about my disease, thus living well with a demanding disease.
Thankfully, my Relapsing-Remitting MS has not prevented me from maintaining full-time employment in the field of Public Relations. I have found ways to navigate my symptoms, including list making for memory loss and an online dictionary or web search portal for those times when I forget a specific word I am seeking. This factor is the most painful part of my MS story, I believe. I experience slowed thinking and often struggle in finding words, both of which make my role as a communications professional just a bit more challenging.
Together, my partner of 10 years and I have a young daughter. Amy has been a part of my disease since the very beginning, and I genuinely offered her the opportunity to end our relationship when the final diagnosis was administered. She didn't, of course, and continues to do her best to understand Multiple Sclerosis as well as the many facets that impact our life and experiences together, including fatigue and heat sensitivity. I worry about the strains I may eventually place on her as a caregiver.
Regularly I also worry about the impact of Multiple Sclerosis on my relationship with my child. Dizziness has disconnected me from her life on two occasions already and although Vivienne doesn't understand the complexity of my disease, I feel an emotional twinge when I can’t fully participate in her daily activities. I have made a point to keep a journal about Vivienne's routines and idiosyncrasies so I can recall them in six months or 16 years. But what will happen if one day I cannot walk? What if I can't help my daughter with her homework? What if I miss Vivienne’s school or extracurricular events because of my fatigue or another symptom yet to strike? These are the considerations that keep me awake at night and keep me lobbying for MS awareness, research, and eventually….hopefully, a cure.
Monday, December 6, 2010
I Am A Performer!
So, here it is. Nearly one week after I officially announced the launch of my blog, I am writing my first post. I thought about my blog a lot. I obsessed about the perfect first post. I delayed writing by completing other, seemingly crucial tasks, such as holiday shopping, designing Christmas cards, and vacuuming. I was engaged in sundry activities, none of which contributed to my blog. I believe this is a pattern.
I started this blog as a dedicated tool for honing my writing skills, expressing my feelings, and sharing my wit and knowledge with the whole wide world. Does sarcasm relay through the written word? And now that I finally have the tool, I am postponing greatness?! Yes, and it all reverts to my personality type. I remember completing a personality quiz at work and almost being blinded by a figurative light bulb, the light bulb that explained why I proclaim to love writing but don't invest time in doing so. It's my personality type.
To confirm the initial findings, I went online and took the Keirsey Temperament Test once again. For those who know me (and who else would be reading my blog at this point?), you won't be surprised to learn that I am a performer! Here's how my temperament shakes out:
Extroverted - 89%
Feeling - 75%
Sensing - 38%
Perceiving - 11%
First, allow me to point out my strengths because, in the true nature of a performer, they are the most eye-catching traits. I am talkative and witty and have the ability to delight with my warmth and good humor. I am lively and uninhibited, probably a problem on most days but let's list it in the strengths column for now. I live in the fast lane, and variety is the spice of life. This is evidenced by my calendar appointments, my to do lists, and my annoyingly long lists of interests and activities. I am incurably optimistic (go ahead, laugh) which is to say that, really, I ignore worries and troubles until they become a significant barrier. My personality type is also the second most generous which serves to explain why I enjoy volunteering and giving back and encouraging others to do the same. (Thankfully, these strengths indicate that I am well-suited to my career in Public Relations!)
My list of weaknesses (or blind spots, as noted here) begins with the fact that I am not a logical thinker. I don't like analysis or abstraction. Furthermore, and as writing is concerned, I seldom write from an outline. I am impulsive and need to see immediate results. Hence, I will obsessively check the stats on this blog post to see the number of impressions. (Be sure to share my blog with your friends!) I have difficulty deciding what to include. And that is why this post is five paragraphs long, and I am still considering how to wrap up. And lastly, but most importantly, I delay writing because I don't have a clear sense of direction. Huh? Me? Oh, and I attempt to visually capture emotion through italics, CAPITALIZATION and exclamation points so get used to it!!!
I started this blog as a dedicated tool for honing my writing skills, expressing my feelings, and sharing my wit and knowledge with the whole wide world. Does sarcasm relay through the written word? And now that I finally have the tool, I am postponing greatness?! Yes, and it all reverts to my personality type. I remember completing a personality quiz at work and almost being blinded by a figurative light bulb, the light bulb that explained why I proclaim to love writing but don't invest time in doing so. It's my personality type.
To confirm the initial findings, I went online and took the Keirsey Temperament Test once again. For those who know me (and who else would be reading my blog at this point?), you won't be surprised to learn that I am a performer! Here's how my temperament shakes out:
Extroverted - 89%
Feeling - 75%
Sensing - 38%
Perceiving - 11%
First, allow me to point out my strengths because, in the true nature of a performer, they are the most eye-catching traits. I am talkative and witty and have the ability to delight with my warmth and good humor. I am lively and uninhibited, probably a problem on most days but let's list it in the strengths column for now. I live in the fast lane, and variety is the spice of life. This is evidenced by my calendar appointments, my to do lists, and my annoyingly long lists of interests and activities. I am incurably optimistic (go ahead, laugh) which is to say that, really, I ignore worries and troubles until they become a significant barrier. My personality type is also the second most generous which serves to explain why I enjoy volunteering and giving back and encouraging others to do the same. (Thankfully, these strengths indicate that I am well-suited to my career in Public Relations!)
My list of weaknesses (or blind spots, as noted here) begins with the fact that I am not a logical thinker. I don't like analysis or abstraction. Furthermore, and as writing is concerned, I seldom write from an outline. I am impulsive and need to see immediate results. Hence, I will obsessively check the stats on this blog post to see the number of impressions. (Be sure to share my blog with your friends!) I have difficulty deciding what to include. And that is why this post is five paragraphs long, and I am still considering how to wrap up. And lastly, but most importantly, I delay writing because I don't have a clear sense of direction. Huh? Me? Oh, and I attempt to visually capture emotion through italics, CAPITALIZATION and exclamation points so get used to it!!!
Subscribe to:
Posts (Atom)